According to the Parkinson’s Foundation, Parkinson’s disease (PD) impacts more than 10 million people worldwide and approximately 2 million in the United States. There are multiple types of Parkinson’s disease that are categorized based on age of diagnosis. Those who are diagnosed with PD after the age of 50 are considered to have “typically occurring” Parkinson’s. The American Parkinson Disease Association states approximately 10% of people diagnosed with PD in the United States have Young-onset Parkinson’s disease (YOPD), which includes anyone diagnosed with PD between the ages of 21-50 years.

A google image search of “parkinson’s disease” will land you in a barrage of brain images and photos of seniors stooping over, shuffle-walking, or participating in group exercise programs. Although these snapshots may illustrate a portion of the PD population, it is a glaring misrepresentation of the whole population.

Because PD affects individuals in all seasons of life, it merits further discussion on ways to maintain the roles you occupied prior to diagnosis. Perhaps your most pressing role is that of being a parent. Maybe you spend the week caring for your grandchildren while their parents are at work. Now that you have PD, how do your responsibilities change? Which daily routines suddenly seem weighty? How do you educate your children or grandchildren about the condition? Here are a few ways to navigate this transition.

Educate yourself

Take the time to become acquainted with how the disease impacts your daily routines. Go at your own pace as you learn about the treatment approach your medical providers will be taking. Once you are comfortable with the information you can more easily adapt it for others as you choose how and what to share.

Find support (and think ahead!)

You may not initially require support in your daily tasks but this gives you the opportunity to plan ahead. Proactively identify the areas where you anticipate the need for support and delegate when those moments arrive.

Get creative

Consider your role as parent or grandparent and think outside the box as it relates to energy conservation, utilizing your skill set, and maximizing on time spent with your loved ones. If PD begins to feel like an unwanted (and uninvited) guest, create space for family time that focuses on the interests of your family members with less emphasis or discussion around PD.

Rest up

Self care is important when you have PD. Fatigue is a real monster that can overwhelm you if you are not being proactive about self care. Take your medication on time, take the time to nap or sleep in the day before family events or prior to committing to taking the grandkids for the weekend.

To get you started, here is a short list of resources on educating your family, staying engaged amidst your PD diagnosis, and tips on bringing a sense of normalcy into your daily interactions.  Due to the highly individualized nature of PD, these resources may not perfectly fit into your current season of life but can be tucked away to share or implement at a later time.

“Carson and His Shaky Paws Grampa” written by Kirk Hall as a tool to teach young kids about Parkinson’s disease and Deep Brain Stimulation. The Shaky Paws book series is based on the relationship between Carson, a 7-year old, and his grandfather (Hall) who was diagnosed with Essential Tremor and Parkinson’s disease.

“Shaky Hands: A Kid’s Guide to Parkinson’s Disease”  written by Soania Mathur, MD who was diagnosed at age of 27 and is currently raising 3 daughters. Also, this 3 minute video from Soania Mathur about how she believes her daughters have been impacted by her disease.

“Grandparenting with Parkinson’s” and “Grandparenting with Parkinson’s: Part 2” written by Sherri Woodbridge on Parkinson’s News Today. She descries a handful of activities to do with your grandchildren and how she balances play with PD.

“Sharing Your Parkinson’s Diagnosis” posted through Michael J. Fox Foundation for guidance on sharing your diagnosis with family and friends and how PD may affect your relationships.

Comment below with the resources or tips you have used to educate and share your journey with your family and friends.

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